Thursday, November 1, 2018

LICHEN SCLEROSUS


WARNING:  This is not a dinner conversation kind of blog.  It’s an intimate and embarrassing topic for women and their doctors.  I have lichen sclerosus.

Lichen sclerosus (LIE-kun skluh-ROW-sus) is an uncommon condition that creates patchy, white skin that appears thinner than normal. It usually affects the genital and anal areas.

Anyone can get lichen sclerosus but postmenopausal women are at higher risk.   People with lichen sclerosus are also at an increased risk of squamous cell carcinoma of the affected area.



For the past few years, I’ve been itchy and often a bit smelly down there.  I’ve gone to the doctor thinking it was a yeast infection or bladder infection or some such.  Treatment seemed to work for a bit, but this always returned.  It started in Maui so I thought it was due to the heat and sweat and often changed the 100% cotton panties two or three times a day.  To no avail.

This summer it was time for the PAP and general check up in the nether regions.  Lucky for me there was a new Nurse Practitioner at my Doctor’s office who listened to my mild complaints of itching and odor.  Lichen sclerosus. WHAT?  I’d never heard of such a thing and it sounded scary!  Lichen?  Doesn’t that grow on trees?

Lichen sclerosis is a skin condition that exists in an inconvenient gray area between dermatology and gynecology; it isn’t heavily studied.  She prescribed meds for an infection (just to be on the safe side).  She recommended Dove soap for sensitive skin or Cetaphil cleanser.  She also had me use over the counter cortisone cream on the affected area.  The tube says “never apply to genital area” and I had to call her office to ask if I wrote down her recommendation correctly. 

After about a month of that, the itching wasn’t as bad but still noticeable.  She had to do a vulvar biopsy to assure her diagnosis (ouch!).  Next phase of attack was a prescription corticosteroid  cream. 


My pharmacy did not have a generic so my copay was $120!

The following day I received an email from Icon Undies on this very topic!  If I had been diagnosed earlier, I wouldn’t have as many of the gruesome side effects.  75% of patients have permanent scarring or phimosis (yeh, look that one up!  Fusing of the skin around the clitoris).  Another visual diagnosis was “loss of architecture of the labia minor”.  Which means they are disappearing!

It’s a shocking diagnosis and embarrassing to discuss.  But I wish someone had mentioned it to me a few years ago.




12 comments:

  1. Wow, you are brave to share this and I have no doubt you are going to help someone out there is blogger land. What terrible place to have a biopsy! My quick research just now says you can get it in other areas of the body as well. The Mayo Clinic website say once diagnosed you have to see your doctor every 6-12 months.

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    1. As you can imagine, I've looked at most reliable sites to learn more. The more I talk about it, the more people relate they know someone who has it! One guy on his bald head!

      The Icon email was very helpful .. they have a way of talking about the private parts and issues relating to them with such a sense of humor!

      Right now I visit the NP every 3 months while we are getting the dosage figure out. Using the gel long term can also be a problem. YIKES.

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  2. Best women's health blog ever!

    https://www.iconundies.com/blogs/body-banter

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  3. I've never heard of this before. Thanks for sharing. Dove is the only soap I use. Love it. And thank you for the link to Icon. Interesting that the Nurse Practitioner was the one to figure it out. They seem to be good listeners.

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    1. Icon talks/writes about ALL the embarrassing stuff that could go on down there ... in laymen's terms.

      NP was shocked that I don't regularly check the status of my parts down there! She made me look in a mirror. I'd rather pay her to keep tabs on things.

      And Icon ... I love their panties!

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  4. I always wear 100% cotton, and I will check out Icon's panties. Thx.

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    Replies
    1. I think they run a little large. And maybe it's mind over matter ... I rarely leak when I wear them

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  5. My Dear Friend,

    First let me say “Thank You” for your (continued) courage to share the facts of life for women as we enter into our best years. You always amaze me and I appreciate your candor. We women (and our lady parts) need to stick together and inform and look out for each other!

    Secondly, I’m sorry to hear of this long-term mis-diagnosis. I hope everything will be well with you! 💚

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    1. It's a forever thing but once it is under control, no one will ever know (unless they get a magnifying glass and permission to peer! Love you, Buddy!

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  6. Here's some more info that might help for when you want to use something other than clob: https://emujoy.com/pages/lichen-sclerosus-causes-symptoms-and-treatments

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    Replies
    1. Hey! Thanks for the lead on a more natural remedy. Gonna go check that out! (love your website)

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